You might think they’re too young to understand. You might think they aren’t paying attention. You might even think they are incapable of awareness. You are wrong; your children are listening.
Your children know what the world thinks about autism. Your children understand. They hear. They see. You may think that’s not true because they don’t look at the source of the voice. You may think that’s not true because their bodies don’t take the positions that you associate with reading. You might think they don’t know. They do. Your children are listening. What are they hearing? What are they hearing from you?
It is hard to be Autistic in this world. It is so hard that I step into it for a while, then pull back again like someone who’s made the mistake of leaning against a hot wood stove. When I am in the Autistic community, I hear things every day – beatings, killings, torture, death. It’s too much to take. So I pull away but autism is everywhere now. Autism awareness — usually completely divorced from autism acceptance — means that there is no place for me to go where I am not followed by the words. I cover my ears, I hide in my home, I shrink my social contact smaller and smaller and smaller until it is a needle-sharp single point and still the words follow me in.
I hear how pitiful I am. I hear how frightening I am. I hear that I will pick up a gun and kill everyone. I hear that I am incapable of doing anything productive. I hear that I am a burden to the taxpayers. I hear that warehousing people like me in our own separate community, away from the rest of the world, would be a kindness to us. I pick up the latest medical journal to read about my health struggles and learn that I cost society $1.4 million.(1) I turn on the news and hear someone talking about my lack of empathy and how dangerous it makes me. So I change the channel and I hear about autism on a comedy, a drama, a commercial — I hear myself portrayed as a joke or a sadness or a tragedy or someone pitiable. All over the internet, people are talking about the great tragedy, the epidemic, the tsunami. People with few other opinions about science discuss my allegedly poisoned brain with confidence, debating whether I was damaged by the air pollution, the GMOs, vaccines, lack of vitamin D, my father’s advanced age. People speak reverently about a future time when people like me are never born any more.
The whole world is talking about people like me. I hear it all the time. I hear it even when I try really hard to get away from it. And your children are listening to it, too. When the world talks about us like this, how do we find the path to feel good about who we are? How do we find the motivation to keep working to try to find our way in a world that so clearly doesn’t want us here? How do we learn to fit in with people who make it clear every day that they think we are broken, wrong, undesirable? How do we keep from feeling hated, pitied, feared, despised, and like we should never have been born in the first place? How do we keep from adopting those feelings about ourselves and turning the hatred inward?
Your children are listening. The world tells them every day that they are unworthy. What do you tell them? Do you love that poem about accidentally traveling to Holland? Maybe you even printed it out and taped it to your refrigerator to remind you every day that Holland has tulips and windmills and isn’t so bad after all? Go read that poem again and step out of your struggle to be okay with Holland when you wanted to go to Italy. Step out of it and think about being Holland. Read it as if you are Holland and weren’t wanted and are mourned and are second-best and put-up-with. Read it and then pull it off your refrigerator and put it in the trash. Your child read that poem. They never said a word to you about it, but they read it and thought about it and they knew it was about them. They knew that they are Holland and you wanted Italy.
Your children are listening. Stop thinking about how hard all of this is for you and think about how hard it is for your children. You have the difficult struggle of raising a disabled child. Your child has the life-long struggle of feeling like they never should have been born.
You may think that parenting an Autistic child is about learning to work with meltdowns, fighting for IEP accommodations, figuring out which interventions are the best, going in front of a judge to keep your young adult child legally a minor so that you can continue to protect and nurture them, funding a long-term plan to care for your child after you are gone. All these things are important, yes. Very important. Many of you have children who will need life-long assistance and it is up to you to make sure that is put in place in ways that ensure the best possible quality of life for your child. You are filled with love and fear. Your obstacles are huge. The challenges are hard.
But when you put your head down to push forward in that struggle, don’t let the never-ending fight block your view of one excruciatingly important thing: your children are listening. They know. The emotional legacy you leave your children is every bit as important as leaving them well taken care of. Your child needs you to help build their spirit. Your child needs you to teach them how to live happy and with a strong sense of self in a world that wishes they weren’t here. Whether you like it or not, your child is listening. Whether you believe it or not, your child is listening. If you don’t do something active — every single day — to make sure your child knows they are good and right and fully human and deserve to be here, your child will only hear the sorrow and fear and pity. Your child will only hear that they are not wanted on this Earth. Your child will only hear what a burden they are. A burden, a disease, poisoned, broken, dangerous, expensive … less than worthless. Less than useless. An active plague upon others, a tsunami, an epidemic.
Your children are listening.
1 Buescher A, Cidav Z, Knapp M, Mandell D. Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr. 2014 Jun 9; online-first edition.